Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help with blood results

angeles99

Recommended Posts

angeles99 Rookie
angeles99
Posted

Hi all,

I'm new to this forum. 

Since a surgery in April 2013 I have had ongoing health issues which have led from one thing to another. I've had no specific diagnosis for anything going on which has left me feeling very helpless. I wont go into specifics in this post but I've basically ended up with extreme breathing difficulties and a neuropathic pain condition. There are countless other things going on but these are the two which have the biggest impact on my life. Should mention I'm 21 years old.

Issues with my gut started getting worse around December 2013 when everything started to go downhill. I ended up on heavy pain meds which I assumed were the cause of my gut problems. I've now been off all meds since around July 2015 and my problems persist. Between this and my complete inability to put on / maintain any weight / muscle, I thought it might be worth looking into celiac so I had some bloods done.  

 

Would be grateful if anyone could help me interpret the results...

I am having a biopsy in a couple of weeks time.

 

Thank you.

 

 

 

 

Scan-151011-0001.webp

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum!  I am sorry to tell you that with two positives (the middle test is to see if you have an igA deficiency which would invalidate the TTG), you most likely have celiac disease.  :(   Do not stop eating gluten until you have had the endoscopy.  Ask that they take six biopsy samples as the small intestine is vast and the doctor could miss damage spots.  

I encourage you to check out the University of Chicago's celiac website to learn more.  After all testing is complete, you can start the gluten free diet.   The good news is that you will soon feel better!  

Questions?  We are here to help.  We are not doctors, but we have issues with gluten!  We live it everyday!  

Celiac Disease is genetic, so any first-degree relatives (parents or siblings) should be tested even if they are symptom free.  

cyclinglady Grand Master
cyclinglady
Posted

Oh, please get check for anemia and vitamin and mineral deficiencies.  

angeles99 Rookie
angeles99
Posted
  • Author

Welcome to the forum!  I am sorry to tell you that with two positives (the middle test is to see if you have an igA deficiency which would invalidate the TTG), you most likely have celiac disease.  :(   Do not stop eating gluten until you have had the endoscopy.  Ask that they take six biopsy samples as the small intestine is vast and the doctor could miss damage spots.  

I encourage you to check out the University of Chicago's celiac website to learn more.  After all testing is complete, you can start the gluten free diet.   The good news is that you will soon feel better!  

Questions?  We are here to help.  We are not doctors, but we have issues with gluten!  We live it everyday!  

Celiac Disease is genetic, so any first-degree relatives (parents or siblings) should be tested even if they are symptom free.  

Hi cyclinglady, thanks for your response. I am looking forward to starting the gluten free diet asap. Hopefully it will mark the beginning of recovery for me. I've had no diagnosis over the past 2 years so I'm really hoping I can see an improvement in my condition. Even the smallest change will be a huge positive.

Thanks again.

squirmingitch Veteran
squirmingitch
Posted

Welcome to the club you never wanted to be a part of. 

angeles99 Rookie
angeles99
Posted
  • Author

Welcome to the club you never wanted to be a part of. 

Thanks... I guess :P

angeles99 Rookie
angeles99
Posted
  • Author

Are my results pretty normal, high or low for someone with celiac? thanks

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I don't know if antibodies levels correlate with intestinal damage or not.  In my case,  I was barely positive yet I had moderate to severe damage.  Others here have had high antibodies but not severe damage.  Everyone presents  differently.

I can not stress this enough -- KEEP EATING GLUTEN until all testing is complete. 

 

bartfull Rising Star
bartfull
Posted

And then after all testing is done go to the coping section here and read the Newbie 101 thread that is pinned to the top. It'll teach you a lot about celiac and especially about managing the diet.

angeles99 Rookie
angeles99
Posted
  • Author

Will do. Thanks all.

nvsmom Community Regular
nvsmom
Posted

Are my results pretty normal, high or low for someone with celiac? thanks

The endomysial antibodies (EMA IgA) tend to show more advanced damage.  It is basically positive in response to the tTG IgA attacking your intestine, so the EMA IgA comes along to wipe out the top layer of the intestines with the misguided hopes of stopping whatever is wrong.  A positive EMA usually means the damage would be found during a biopsy.  Just make sure they take at LEAST 6 samples if a biopsy is done.

Ypor tTG IgA and EMA IgA results were in line with mine (high enough that they stopped counting) and I had the disease for at least 35 years before I was diagnosed. I skipped the biopsy because a positive EMA IgA and tTG IgA is basically a sure thing in terms of diagnosis.  I figured I could get the biopsy later if I did not improve on the gluten-free diet, but I did improve.  :)

As the others said, don't stop eating gluten until you are satisfied that testing is complete.  Best wishes.

angeles99 Rookie
angeles99
Posted
  • Author

The endomysial antibodies (EMA IgA) tend to show more advanced damage.  It is basically positive in response to the tTG IgA attacking your intestine, so the EMA IgA comes along to wipe out the top layer of the intestines with the misguided hopes of stopping whatever is wrong.  A positive EMA usually means the damage would be found during a biopsy.  Just make sure they take at LEAST 6 samples if a biopsy is done.

Ypor tTG IgA and EMA IgA results were in line with mine (high enough that they stopped counting) and I had the disease for at least 35 years before I was diagnosed. I skipped the biopsy because a positive EMA IgA and tTG IgA is basically a sure thing in terms of diagnosis.  I figured I could get the biopsy later if I did not improve on the gluten-free diet, but I did improve.  :)

As the others said, don't stop eating gluten until you are satisfied that testing is complete.  Best wishes.

Thanks so much nvsmom - really helpful answer :) How long were you gluten free before you started noticing an improvement?

nvsmom Community Regular
nvsmom
Posted

Thanks so much nvsmom - really helpful answer :) How long were you gluten free before you started noticing an improvement?

Within a few days my bloating went down, and stomach aches decreased a bit. Within 3 days I hit a withdrawal, or withdrawal like symptoms, and felt worse for a week or so (headache, fatigue and an impressive level of crankiness).  Within a couple of months my migraines were mostly gone and my plantar faciitis disappeared, and my hair loss improved - bunches of 1"long hairs growing up out of the top of my head... attractive.  LOL  Around that time I started losing weight and my fatigue improved a bit.  

Arthritis was the worst for me. It took a LONG time to get better.  It was actually worse at about 2-6 months gluten-free than it was before. I had a terrible flare-up that made it hard to hold a toothbrush never mind carry in a grocery bag.  Eventually my flare-ups got shorter, milder, and less frequent. I would say it took about 2 years for my arthritis to get mostly better. I'm now at the point where when I get a flare-up, I am only flu-ish for a day or too, rarely get mouth sores ad hair loss with it, and the pain is mild and only lasts a few days and then it is gone for another 6 months.  Contrast that with 4 month flare-ups with only a month or two in between. SO much better.  :)

I think my recovery took about 2-2.5 years. I know my EMA was normal within 6 months but my ttG IgA was abnormal for at least a year even though I was gluten-free. It's impossible to get completely better if the body is still attacking itself.  Patience is definitely needed when dealing with celiac disease.  :(  It really is worth it when you get there though.  :)

angeles99 Rookie
angeles99
Posted
  • Author

Within a few days my bloating went down, and stomach aches decreased a bit. Within 3 days I hit a withdrawal, or withdrawal like symptoms, and felt worse for a week or so (headache, fatigue and an impressive level of crankiness).  Within a couple of months my migraines were mostly gone and my plantar faciitis disappeared, and my hair loss improved - bunches of 1"long hairs growing up out of the top of my head... attractive.  LOL  Around that time I started losing weight and my fatigue improved a bit.  

Arthritis was the worst for me. It took a LONG time to get better.  It was actually worse at about 2-6 months gluten-free than it was before. I had a terrible flare-up that made it hard to hold a toothbrush never mind carry in a grocery bag.  Eventually my flare-ups got shorter, milder, and less frequent. I would say it took about 2 years for my arthritis to get mostly better. I'm now at the point where when I get a flare-up, I am only flu-ish for a day or too, rarely get mouth sores ad hair loss with it, and the pain is mild and only lasts a few days and then it is gone for another 6 months.  Contrast that with 4 month flare-ups with only a month or two in between. SO much better.  :)

I think my recovery took about 2-2.5 years. I know my EMA was normal within 6 months but my ttG IgA was abnormal for at least a year even though I was gluten-free. It's impossible to get completely better if the body is still attacking itself.  Patience is definitely needed when dealing with celiac disease.  :(  It really is worth it when you get there though.  :)

Thanks nvsmom. Great to hear that you've had such an improvement. There is hope...

nvsmom Community Regular
nvsmom
Posted

Thanks nvsmom. Great to hear that you've had such an improvement. There is hope...

There is hope. Up to about 3 or so years, I would definitely say that there is always hope for improvements.  After that, chances are that the problem is caused by something else, or if it was celiac caused it has become a permanent issue which may not improve much more.

Hang in there.

manasota Explorer
manasota
Posted

For people reading this who are older at diagnosis (I was 60yo), even at 5 1/2 years gluten free...I still see improvement along many lines.  I believe where there is life, there is hope for improvement.  The improvement is slow and gradual.  But it's still improvement.  I plan to keep trying everything I can think of and to eventually get well.  There is no documented evidence that I know of to prove me wrong.  Besides, nobody knows me better than me.  ;-)

I'll either get well or die trying. ;-)

nvsmom Community Regular
nvsmom
Posted

:) Well said.

angeles99 Rookie
angeles99
Posted
  • Author

Very true... Wise words. Just thought I'd give a quick update - had my endoscopy a couple of days ago where they took the biopsies. Will get my results in a week, however the doc who took the biopsies said I definitely have celiac. Started gluten free diet yesterday. Looking forward to regaining a part of my life :) Thanks all.

squirmingitch Veteran
squirmingitch
Posted

Welcome to the club. 

nvsmom Community Regular
nvsmom
Posted

Ditto.  :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
    3. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was...
    4. Amy Barnett
      - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

      What is the best liquid multivitamin for celiac disease?
    5. Scott Adams
      0

      Quick Gluten-Free Shrimp Stir-Fry With Crisp Vegetables

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.